Hi Merry, I would love to speak with you about starting a support group in your area. You can email me at ntmmail@ntminfo.org and we can set up a time to talk.

@SueC
Hi Sue, Thanks for the response! I'm going to keep your email in my back pocket for a bit, if you don't mind. I will likely be starting NTM treatment in the next few weeks and I want to see how it affects me physically before getting in too deep.

That being said, do you provide any kind of written suggestions for discussion topics, activities, etc? I worked as a manager for 10 years, and have done some group leadership as a volunteer, but it's nice not having to reinvent the wheel if guidelines already exist.

Sue may I ask what treatment your doing for the NTM?

Debbie Schwartz
I started a Support Group in the Phila. Pa area a few years ago. We meet on the 2nd Sat every other month and I have meetings in 2 different hospitals which I rotate each time. Some of us like to meet in the cafeteria at Noon for lunch. Others just join us from 1-3. I have had Jill from Insmed Pharm come several times to talk about their new study on inhaled therapy. Otherwise, we just go around the table and discuss meds, complications, and in many cases recommendations for new doctors. I have approximately 70 members on my email list, but only about 20 attend between both hospitals. The others are very happy to receive my minutes.

Thanks Debbie for the information. We have had many patients asking about how to start one. I am sure it is a much needed and welcomed support for your members.

There was a small not very group started in my area that very few people attended. I sent Ntmir a message to get a list of her members. I called hospitals and libraries and explained about what I wanted to do. Libraries refused me because they did not feel it would be open to the public and after calling several hospitals I got 2 to agree to give me space. I wrote to my email list and also asked them for other peoples names. I asked which hospital was closer to them and found it was split down the middle. Each hospital is 1 hour from my house, but I decided to have meetings every other month the 2nd Sat. and I switch hospitals each time. So I meet at each hospital every 4 months. I usually have 10 or so to each meeting. Some of us meet in the Cafeteria at Noon and then the meeting is from 1-3.
I have given each member the literature from Ntmir to take back to their Dr. with my cards that are provided by Ntmir. I also am on the Ntmir website so if people are looking for a meeting or info they contact me. I do not care if they call or email. I have about 70 people on my email list. Many live faraway or are not able to attend meetings but I make sure they get my minutes and I send them any info in the mail I receive. I also pass on the very informative minutes from the NY group. They are fortunate to have many speakers because of their location.